Secondary Use of Patient Tissue in Cancer Biobanks

Debra J Mathews, Julia T. Rabin, Katharine Quain, Eric Campbell, Deborah Collyar, Fay J. Hlubocky, Steven Isakoff, Jeffrey Peppercorn

Research output: Contribution to journalArticle

Abstract

Background: As scientific techniques evolve, historical informed consent forms may inadequately address modern research proposals, leading to ethical questions regarding research with archived biospecimens. Subjects, Materials, and Methods: We conducted focus groups among patients with cancer recruited from Massachusetts General Hospital to explore views on medical research, biobanking, and scenarios based on real biospecimen research dilemmas. Our multidisciplinary team developed a structured focus group guide, and all groups were recorded and transcribed. Transcripts were coded for themes by two independent investigators using NVivo software. Results: Across five focus groups with 21 participants, we found that most participants were supportive of biobanks and use of their own tissue to advance scientific knowledge. Many favor allowing research beyond the scope of the original consent to proceed if recontact is impossible. However, participants were not comfortable speaking for other patients who may oppose research beyond the original consent. This was viewed as a potential violation of participants’ rights or interests. Participants were also concerned with a “slippery slope” and potential scientific abuse if research were permitted without adherence to original consent. There was strong support for recontact and reconsent when possible and for the concept of broad consent at the time of tissue collection. Conclusion: Our participants support use of their tissue to advance research and generally support any productive scientific approach. However, in the absence of broad initial consent, when recontact is impossible, a case-by-case decision must be made regarding a proposal's potential benefits and harms. Many participants support broad use of their tissue, but a substantial minority object to use beyond the original consent. Implications for Practice: For prospective studies collecting tissue for future research, investigators should consider seeking broad consent, to allow for evolution of research questions and methods. For studies using previously collected tissues, researchers should attempt recontact and reconsent for research aims or methods beyond the scope of the original consent. When reconsent is not possible, a case-by-case decision must be made, weighing the scientific value of the biobank, potential benefits of the proposed research, and the likelihood and nature of risks to participants and their welfare interests. This study's data suggest that many participants support broad use of their tissue and prefer science to move forward.

Original languageEnglish (US)
JournalOncologist
DOIs
StatePublished - Jan 1 2019

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Duty to Recontact
Research
Neoplasms
Focus Groups
Research Personnel
Consent Forms
General Hospitals
Biomedical Research
Research Design
Software
Prospective Studies

Keywords

  • Bioethics
  • Informed consent
  • Tissue banks
  • Tissues

ASJC Scopus subject areas

  • Oncology
  • Cancer Research

Cite this

Mathews, D. J., Rabin, J. T., Quain, K., Campbell, E., Collyar, D., Hlubocky, F. J., ... Peppercorn, J. (2019). Secondary Use of Patient Tissue in Cancer Biobanks. Oncologist. https://doi.org/10.1634/theoncologist.2018-0376

Secondary Use of Patient Tissue in Cancer Biobanks. / Mathews, Debra J; Rabin, Julia T.; Quain, Katharine; Campbell, Eric; Collyar, Deborah; Hlubocky, Fay J.; Isakoff, Steven; Peppercorn, Jeffrey.

In: Oncologist, 01.01.2019.

Research output: Contribution to journalArticle

Mathews, DJ, Rabin, JT, Quain, K, Campbell, E, Collyar, D, Hlubocky, FJ, Isakoff, S & Peppercorn, J 2019, 'Secondary Use of Patient Tissue in Cancer Biobanks', Oncologist. https://doi.org/10.1634/theoncologist.2018-0376
Mathews DJ, Rabin JT, Quain K, Campbell E, Collyar D, Hlubocky FJ et al. Secondary Use of Patient Tissue in Cancer Biobanks. Oncologist. 2019 Jan 1. https://doi.org/10.1634/theoncologist.2018-0376
Mathews, Debra J ; Rabin, Julia T. ; Quain, Katharine ; Campbell, Eric ; Collyar, Deborah ; Hlubocky, Fay J. ; Isakoff, Steven ; Peppercorn, Jeffrey. / Secondary Use of Patient Tissue in Cancer Biobanks. In: Oncologist. 2019.
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